Maryann: From Patient to Advocate

Maryann Wahmann explains what it was like being misdiagnosed for many years and her reasoning for forming the Neuroendocrine Cancer Awareness Network.

PUBLISHED October 27, 2017

Transcript:

Shubham Pant, MD: Welcome back to CURE Connections®. We have just been joined by Maryann Wahmann. She’s the founder of the Neuroendocrine Cancer Awareness Network. Welcome, Maryann.

Maryann Wahmann: Thank you for having me.

Shubham Pant, MD: And thank you for joining us again, professor Larry Pleasant and Dr. Michael Morse. So, Maryann, tell me more about your organization—how did it start? Did it have a different name before? Has it always been called “Neuroendocrine Network”?

Maryann Wahmann: So, I was misdiagnosed for 7 years and I finally was diagnosed in 2001.

Shubham Pant, MD: And diagnosed with carcinoid?

Maryann Wahmann: I was diagnosed with carcinoid. And so, I reached out to try to find out some information and there was a lot of misinformation out online.

Shubham Pant, MD: That’s shocking.

Maryann Wahmann: And when I started reading that I would be dead in 5 years, I wasn’t very happy.

Shubham Pant, MD: Seriously? Somebody said about neuroendocrine cancer that you would be dead in 5 years?

Maryann Wahmann: Yes. So, the statistics back in 2001, most of them said that after 5 years, you would be gone. And so, we started working with the Carcinoid Cancer Foundation. Then in 2002, I took over the support group in New York. And I realized that there was no awareness of this disease and there wasn’t much education out there. There was very, very, very tiny little research going on. And so, in 2003, we started the foundation. Our organization was originally called the Carcinoid Cancer Awareness Network because, of course, I was diagnosed with carcinoid. And through the years, we had grown and we started doing all neuroendocrine, and less and less doctors were using the word carcinoid, so we decided in 2014 to officially change our name to “Neuroendocrine.”

Shubham Pant, MD: A pleasant journey. Now at the beginning, you said that you were misdiagnosed for 7 years. Tell me a little bit about that.

Maryann Wahmann: I was misdiagnosed for 7 years. I had 7 colonoscopies…

Shubham Pant, MD: You had 7 colonoscopies?

Maryann Wahmann: And 7 endoscopes; 7 different doctors. I was told I had irritable bowels, ulcerated colitis. I was told I was crazy. I was told I needed a marriage counselor and that’s why it was happening. I had severe abdominal pains, rectal bleeding to the point where I was having blood transfusions and severe diarrhea. There were times where I would literally not be able to leave the bathroom and go 40 times.

Shubham Pant, MD: Did you have a flushing? So, what were your symptoms? Bleeding is not a very common symptom, is it?

Michael A. Morse, MD: It depends on where the tumor is located. But most people don’t report that as a common problem.

Shubham Pant, MD: Maryann, for you, though, it was bleeding. Did you have other symptoms or other diseases that were maybe causing it, or what was the thought?

Maryann Wahmann: Well, the thought was that I also have Lupus and IPP, which is a low platelet count. So, when the bleeding started, they assumed it was related to that. When they were going in, doing the colonoscopies and the endoscopes, they would see inflammation and they assumed it was related to the Lupus. And finally, with the last doctor, I went in there and I said, “Hey, you have to go in there and don’t come out until you find out what’s really going on.”

Shubham Pant, MD: I have all day. I have all month.

Maryann Wahmann: But at this point, I was beginning to think I really was crazy, and I was very, very lucky I had a supportive family. Because most people don’t have that relationship, and I was very lucky. My husband stood by my side and said, “No, there’s something seriously wrong.” And so, I finally went to my last GI doctor and he said, “Had anybody ever used the pediatric scope?”

Shubham Pant, MD: Is he pediatric colonoscopy?

Maryann Wahmann: Pediatric colonoscopy.

Shubham Pant, MD: OK.

Maryann Wahmann: And I looked at him like he had 4 heads. I said, “What are you talking about? I’m in my 30s, why would you use a pediatric scope?” He said, “Listen, it’s more flexible, it’s a little bit longer. Maybe I can get into the area and see what’s going on.” And sure enough, he came out and he found it. He said, “I found the bleeding, I found the tumor.”

Shubham Pant, MD: Oh, then the tumor was bleeding?

Maryann Wahmann: The tumor was bleeding, and it was just a little under 2 cm. So, I went on my journey. I started having surgery, started on somatostatins, then when on to octreotide, a 24-hour infusion with an insulin pump and I just started in April with Xermelo.